I often keep technical reading windows open on my tablet for days at a time as it takes me forever to comprehend what is written.
I have been reviewing spinal cord anatomy as I now have interest in how autonomic nerve structures are configured and how they co-habitate with somatic nerves in the vertebral structures.
I again keep reading about the gray matter in the cord for probably the 500th time trying to get the functional picture.
Today, I happened on an article posted in Medscape by Deborah Brauser on March 10, 2017 titled "Spinal Cord Gray Matter Atrophy Seen in Earliest Stage of MS."
They used something called "axial 2D-phase sensitive inversion recovery MRI at the C2/C3 cervical spine level and at T9/T10 thoracic spine level looking at atrophy (shrinkage) of gray matter area as a biomarker.
It is not just about the obvious lesions anymore.
Article quote:. This could be indicative that this is a process independent of inflammatory activities."
If you have an interest in gray matter functional components and how they relate to disease and disability, the scientific world is doing some pretty neat stuff to catch the problem early in the course of disease progression.
Not that I will ever find or get access to a doctor who knows what that kind of MRI is or how to get it or how autonomics may be affected.
Just fly to Australia and ask for the scans you want. That's what I did so when my doc says - but how do you know you have sjogrens when he has my head CT from Australia I now have a lovely ultrasound of my parotid glands with big holes in them from years of being eaten away
Just kidding about the travel, hope you are having a good day x
Now my son 4 years ago fell off the sofa...no biggie..... a month later he had ear infection so went to his ent.... gave him anti biotics come back a week later.... week later no infection but big hearing loss... a week again another loss.. and so on.... a few weeks later crying his back hurt... emergency ortho... they said can't see anything on X-ray... go away high dose meds... week later back again pain not going away... trainee orth... any tingling etc son yes I can't feel my legs... all panic emergency MRI where we also take bloods .... find a small fracture in his l5 s1....
In back brace 24/7 for 9 weeks... all the time getting hearing tests including the neuro otologist to guy in manhattan ny telling us he's got sensineurological disorder which is not returnable...... saying steroid injections into the ear drum and canals.... me saying listen he's got a fracture in his some can it be related.... everyone audiology, ent, ortho, neurotology, No no there's no link.... 3 weeks in a brace he goes from wearing dual hearing aids to hearing ok.... he's called a liar as am I!!!! But I researched... spinal injuries can affect many thing if compromised.... I wish Drs would look at the big picture instead of headache ... see Nero , aching joints see rheumatology , vision loosing see optomologist.... tired see endocrinologist .... people look at the whole picture to see it to see where the problem lies.... talk as a team..... even with the best in the world specialists only i as a parent connected the dots... why??? Because I saw it, lived it, fed it, slept it.... so never give up I feel we will be the ones to find the answer as we live eat and breath it.... we can do this as crap as we feel..... let's keep going my friends.... hugs !!! Time for wine.... I know it's bad for me.... oh if I mix with cheese the nightmares are very real .....π€πππππ
If I was a doc I'd be out there researching, writing trying to connect dots. Otherwise why bother.
Oh I'm forgetting the nice salary and the title.
I was drinking wine on the flight this morning at 5am as it makes me need to wee and my hand was so swollen with a stuck ring on my finger.
I sometimes have a glass of wine or coffee as I have no idea what's going on with my kidneys anymore. Should have also got that scanned but then I could have just kept going, sore knees, foot where I fell last year that never healed, hips, heart and lungs...
When I get the energy il do some posts with pics from my trip, someday
That makes me smile. I can see you storming into exam room flinging research when all they want to do is read the sports pages out of the newspaper. Make 'em work for their pay. Wouldn't that be a novelty...
May this Memorial Day find you in good spirits and better health.
of course, there would be less storming and more control. remember I am cognitive blunted these days. lol π³. got to love doctors...if i express too many emotions i need medication, if I do not react with the expected emotions I am cognitive blunted. can't win π³
But I do most definite go to am appointment with research and information to back my requests and questions. they can try and keep me from educating myself...but it does not work. I tell them straight forward..im going to look this all up. my primary now just prints out info for me to read. she figures she would rather forward me to the good info, since I'm going to research...now that is a smart doctor. right? hmmm π³π³
I am glad I made you smile. laughter heals all right? hope you are having more good days than bad. keep smiling and finding those moments to laugh...and remember to reach way high and grab my virtual well wishes and hugs.
I agree with you with emotions. I once cried in the useless neuros office nothing to do with anything medical. Just having a bad day. Then when I got diagnosed with FND all they offered me was a neuropsychiatrist.
I wanted to tell them where they could stick that person.
I'm lucky my gp copies me in on everything he sends and receives.
With our own research, why are docs scared of this. It's true they can help by providing sites, paperwork etc but unless you are on someone's blog telling you to eat 20 oranges a day and your FND will go away, most sites these days are informative.
Being informed means you can be prepared for appointments and also ask questions that docs might not think of but have answers for.
β’ in reply to
Amallia.
A joy to have you back.
Recover. Want to hear about what you found in the rest of this world from your travels.
Must have been better than sitting at home like me. At least I hope.
More smiles. You are a wonderful friend who is changing the way things work in medicine one doctor at a time.
The neurologist they are sending me back to is avoiding my communications. Last time we were face to face, he said:
"Well, I think we are all done here."
Wait til he tries to deal with refractory low BP. As bad as I feel all the time, he is going to be dealing with a jackal that feeds on white coats and he is first game up.
Sorry, I am not vengeful. Just hungry....
Be good to yourself today Patti. You deserve it!
Dan / Seattle
Uh when's the next flight out? Il join you in 'chatting' with this idiot.
Can you imagine if someone said that to him?!!!!!!!!
Amallia.
You always said, the docs should have to go thru this stuff FIRST before ever seeing a patient for the same problem.
In USA we now call it "neu-rotten-ology." They let the problem go untreated so long it's better just to throw it out. But I am not complaining. It has become the truth.
Take care my long distance family member. You important.
Dan / Seattle
You are not an object to be thrown out though. You are everyone on this website and I'm sure a few more people in the world's friend, family member and mentor.
It's not ok to mess up and stop.
Give me this persons contact and il send them a letter in reality
All my love to my Dan family xxx
β’ in reply to
Amallia.
It is ok. You are best just to be here. The world always rights itself. Truth prevails. Trust binds those in hardship together. Trust also brings the merging of the known with the unknown.
We go through these things for a reason. The reason does not always pertain to ourselves. Often, it is the way in which reconciliation is reached. There are many forces at work. I call on patience to demonstrate what is to be revealed and received and in turn gifted.
We stand, we observe, we listen and we stay together. With that no harm will come. Faith remains our guide. Wisdom is our only defense
But I am still hungry. Let me see those pictures of the docs again. One of them must look appetizing.... at least to a jackal.
Keep sailing the seas. Your family here loves you every day.
Dan "the jackal" / Seattle
β’ in reply to
Dan, I do voluntary work for an organisation linked to the UN. Not done much lately though.
It provides free worldwide education to everyone. So basically you write up classes and they become part of a genuine degree online.
I might start classes for how to be a real and caring doctor and not a ****tard as my reclusive Australian friend calls 90% of the world
Keep on hanging on π€β€οΈ
Destiny. Maybe we set up a worldwide phone bank for docs to call in and seek counseling. I would love to be the switchboard operator in charge of directing them to speak with the appropriate member of our community.
Dan, I wish I was closer and I would advocate for you...the doctor would not what hit him. lol But Im sure you will be ready to get more help...i like that you spunk is back. I missed that in you. You have this and they have to listen. just have to ask the right questions. I do hope that you get answers. it is well over time.
I do get it though....It is hard, as you know I am dealing with the same...except that I have 3 neurologists all having their own agenda. I think sometimes that as a zebra the doctors all want to be part of the care...like a rare animal. as for the 3 Neuro, still not sure which one I will keep. they all have their strengths...and of course they are all learning that I am NOT one to be ignored. I am calm, organized and always come prepared. probably whine has labeled me as cognitive blunted. lol oh well i found out getting upset did not help. only landed me on Zoloft....so now, I give them a list of symptoms, detail heart outline of all the evidence issues and formulate a tone of well thought out questions. I request tests and ask the why when they refuse. To one doctor who refused my hip MRI, I said in an email..." let me ask you this, if I was another patient without a "functional" diagnosis...would you have ordered the test? "
I will not be ignored and neither should you! Keep us posted Dan. Ill have to send extra positive energy.
Enjoy every word that you write. Keeps spotlight shining...
Is "cognitive blunted" same thing as bull in China shop? I am from south and everything down there is translated into catch phrases cause we don't use the English dictionary very much.
You are survivor. God Bless you for that trait. Admiration.
Oh yes. .. If Amallia becomes CEO of our community consulting service to help doctors become more patient focused,
i think that would be great...I like that " docs without orders" since man that is what it is. my neurologist defends and quotes the "functional" message...but I had to inform him all though all 3 of them in the neurology department are in agreement with perfect understanding of my "functional" status and the impact my systemic disease has on my body and brain. all of the other professional doctors have not up with the times and many pass judgement as soon as they see "functional" included. lol Told him I've seen that reaction first hand and can only defend things so much. right or wrong doesn't matter. It happens. ah
oh and before i forget and yes that happens often...cognitive blunting means that the patient is not displaying the level of emotion that would be expected in a given situation. seriously? I think my young neurologist is too funny. I am definitely controlled and am handling all that I have. I am me...and not much shakes me.. I learned early to educate myself as a way to deal and find a way to accept. That I find comfort in knowledge and have found getting upset does not help... like i said, the last time i expressed my frustration i landed myself on Zoloft. Trying to avoid that...I am definitely NOT the norm and he needs to seriously read that memo. right? lol this young doctor needs to learn, perhaps I will be the one to teach them. lol It is not elusive...which is what he calls my auto immune diagnosis...because of the no skin issues it can't be scleroderma...hate to bust him but my rheumatologist is at the top the list of not accepting the "functional" gait..wants to give me another referral to yet another neurologist. I think I have met my quota on neurologists for now. I'm in PT and that is my focus...if they mis-diagnosed the neurological issues, thats a real possibility and according to his information he had me read, it states that functional gait is the one with the highest mis diagnosis percentage....but for now, I'm picking and choosing my battle. I'm still recovering from the last battle...lol Anyway...they need to understand, we are rare and rare does exists. we are like the horses they learn about in medical school, but yet amongst the best horses there are some beautiful zebras, with some wearing multiple hats and colors. lol I may have to show up in his office with zebra prints...perhaps he is a visual learner. lol
sending energy to help when you go to the doctors again. interested in hearing all about it and see what track they throw you on...perhaps track 101. Thats a calm track. one filled with education. Patti
Patti.
Outstanding.
Ok. I am cognitively blunted.
That happened shortly after mother tore into me as a kid for acting like a bull in a china shop. See, I can link it all together.
Your wisdom and self control is impressive indeed. Teaching doctors takes time and patience. I am too compromising. Always trying to make the idiot wearing the dunce cap feel better about his incompetency.
So last night, I tried to find out why I keep the peanut butter always within arm's reach. Turns out the stuff is full of arginine which is an amino acid and promotes human growth factor among a long list of other things good for me. Now if I can just find out why I love it with vanilla ice cream. Used to thrive on a high fat diet....
i am going to leave that mystery up to you...im not a peanut butter lover. hey maybe thats my problem. lol as for the vanilla ice-cream..now that I do love...but as of late my GI track does not. I can however tolerate gelato...go figure. that still bogles my mind. i would ask my brain but its protesting these days.
much light to you. keep me posted on your investigation of peanut butter an vanilla ice-cream. 2 very good members of the food group.
Figuring out why we crave certain things and not others is incredibly valuable. Analyzing my food cravings allowed me to understand that I needed dopamine and not seratonin, for example. Keep up the good work!
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